JuMPiNG

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Look what Abi is doing!

:Happening in June:

Abi cut 4 teeth at the beginning of the month. They all came in the first weekend in June. Her top front tooth came in, following with a bottom front tooth. And then the next day, another top front was in, along with the other bottom front. Now she is working on 2 more top teeth. Pretty soon she'll have a mouthful of TEETH!
We took Abi to see Dr. L, her Neurologist the second week in June. She wasn't supposed to have an appointment, but the first Sunday, Abi had a horrible day. She had had 6 seizures by 11 am that morning & then 1 later in the evening. This concerned Dave & I. Normally she was only having 2-3 a day. We got her into the Dr. that following Tuesday because she still wasn't doing any better. We had another EEG performed and Dr. L explained to us what was going on with our little Miss. The good news is her Infantile Spasms are under control. They didn't show up on the EEG. The Dr. believes that the Vigabatrin is doing its job, and that is what is controlling her Infantile Spams. We are so excited for this news! The bad news is that she is experiencing what is called Partial Complex Seizures. We knew that her 'spells' had changed and kind of felt like they were the seizures instead of the spasms. So he increased her dose on the Topamax & we hope that it will soon control her seizures. So far, it has helped, but she is still having about 1 or 2 a day.
As for her development, she is doing awesome!!! She started saying "Da-Da" on Fathers Day. It's the cutest thing ever!!! Along with her vocalizing more, she also has almost accomplished rolling. She can roll to her side, almost belly, but can't figure out to move her arm.
Her Physical Therapy is going well. She had PT a few weeks ago, and it was very informative. We got a new PT & she gave us some more exercises to do with her & stretches for her muscles. She is a little concerned that Abi might have what is called Torticollis <--click to read about). So we are doing stretches with her to get her neck muscles working properly. Also she thinks she is aspirating when she eats. We have to prop her up to where she is sitting fully up while feeding her a bottle and feeding her solids. Also we prop her while she sleeps. We will be having a Occupational Therapist come out to see her and evaluate her. Hopefully they'll help her with her feedings and figure out what we need to do so this no longer happens. She most likely will have a swallow test to see if she is for sure aspirating. It doesn't come as a surprise to us as I thought it would, & I think it's because these girls with Aicardi Syndrome are known for aspirating. We just want to get it under control so she doesn't get all that fluid in her lungs and cause her to get sick. That is one of the reasons her condition is fatal, because of the aspirating part. So we are doing all that we can do to help her to not choke while she eats or sleeps.
Abi is such a joy in our home. We are focusing more and more on the joys of Abi daily, instead of focusing on the uncertainty of tomorrow. We are living in the moment. Enjoying every day together. It's amazing to me how the little things I used to take for granted, before Abigayle, are now so precious to me! We KNOW the Lord is with us! We have been truly blessed by this sweet angel in our home. We feel our Saviors love all the time!!! I do not know where we would be if we didn't have the gospel in our lives. His love, along with everyone else has brought us so much peace and comfort! We feel your prayers. Thank you all for continuing to keep our little Abi in your prayers. She is a miracle!

Da Da!

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Abi started saying "Da Da" on Fathers Day!!! What an awesome word to hear her say & on such a perfect day!!!
She amazes us every day!

Rolling

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Abi has almost conquered rolling from her back to tummy! If she can just get that arm underneath her to move just a bit. This is so exciting to see!!!
Pretty soon she'll be our rolling machine...

Results

Abi is doing well...

Since the last post, Abi's EEG results showed that she still is having Infantile Spams, but they aren't as patterned as IS usually are. On top of that, she is also having what looks to be Partial Complex Seizures (that would explain her 2 seizure episodes). So, Dr L increased her dosage 2 more times since the the last post and she is now taking 400mg of the Vigabatrin 2x a day. Dave & I both feel like it is working. Although she is still having her 'episodes', they have decreased to anywhere from 1 to 3 a day. The new dosage has made Abi sleepier, but it's a side affect, and once her little body gets used to the new dosage she should be back to normal. I am supposed to call sometime this week & let Dr. L know how Abi is doing & also let him know if her 'episodes' have decreased. Our main goal is to get her IS/seizures under control. Until then, we will continue to experiment with the medication. It's pretty much trial and error.
I wish so bad that I could take away Abi's disease. Some days are harder than others. But most days get easier. Does that make sense? I am so extremely grateful for my family... especially Dave. He is my rock. When I am having a hard day, and ready to give up, that's when Dave comes to my rescue. We never seem to have bad days together. If I'm down, he's up. And when he's down, I'm up. I'm pretty sure the Lord made it that way. I am grateful for our immediate families & also our extended families. We could not get through this alone. And I cannot forget all of our friends!!! I once heard a saying that says "It takes a village to raise a child." And to all of you... THANK YOU! Each one of you have helped our family. It does take a village, to help with a family, to raise a child and to weather the storms of life...

We have been truly blessed.

Sitting Up!

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Another Update

Things are looking up for her. She has been on the Vigabatrin for almost a month now. Although she is still having spasms, we have seen a great improvement in her developing skills. She now can sit up ON HER OWN; She is progressing well with pushing up on her arms while she is on her belly; she is vocalizing A LOT now... infact, the other night we swear she said, "DaDa"...It was so clear and so cute!!! She is also grabbing for things more now, and seems to be using her left side a little bit more than she used to. It's like she is a new person! She is so happy. The fog has been lifted for her. She has had 2 episodes where she has seized. They don't last long, but it is a concern for us. With the medicine we are trying to get her spasms/seizures under control. We had a visit with her Neurologist & Ophthalmologist last week and her Neurologist performed another EEG on her to see what is going on with her spasms/seizures. I will be finding out the results to the test today, and will post later about them. She is still on the Topamax and we are working up to a new dosage of 250mg on Saturday with her Vigabatrin. If we DO NOT see improvement, then we will have to go back to the Dr. sooner than July (our next appointment) to determine what else we can do for her. Her eyesight is still great! Since she is on the Vigabatrin we have to see the Ophthalmologist every 3 months, which is fine by us. She tracks well and seems to have no problems with her vision. We are still taking her condition one day at a time, but with each day, it gets easier. She has been such a blessing and we do feel like miracles have happened for her. We are enjoying every moment of every day with our girls and wouldn't have it any other way.

:Abi update:

(Abi with her cute little wrap on her head to hold all the electrodes in place while getting an EEG)

Since the last posting on Abi, we have seen Abi's Neurologist twice. The first visit they performed another EEG to determine if her seizures were still Infantile Spasms <-- click here to read about them), or if they have become seizures. Her EEG showed that they are infantile spasms, but modified...whatever that means. Dr. Lloyd put her on another medicine called Topamax and also told us he wanted to start her on a 6 week treatment of ACTH <-- click here to find out what ACTH is. At that point I had read a little about ACTH and was not that impressed by the medicine. But the more he talked to us about it, the more we felt okay with doing this treatment. So, we agreed & were to go home and wait for a call from the nurse who would be over in the next week or so and start her on her injections of the ACTH. Later in the evening I started researching more about ACTH and as I researched I found nothing good about this drug. The whole drug seemed to have no positive about it. Yes, maybe it would slow down or even stop Abi's seizures, but more times than none, as soon as the treatment is over with, the seizures come back. And the side effects are horrible. Water retention, mainly in the face; increased appetite; irritability; sleepless nights; low immune system; high blood pressure...and the mother of all....Heart Failure!!! WOW! Was I upset! Why didn't the doctor tell us ALL of the side effects. Instead, he only mentioned some. So when Dave called home while on his lunch break at work, I told him of what I had read & how I DID NOT want Abi to get the treatments. To me, it seemed like such a pointless drug, why put her through something so intense, and then after she is through with the treatments, see her seizures come back. That is pure misery to me! So the next few days, Dave & I researched some more, prayed, attended the Temple, and prayed some more. We decided AGAINST the ACTH & decided to go with a drug called Vigabatrin (Sabril)<-- click to read about this drug. Vigabatrin is not FDA approved, so therefore we cannot get it in the United States. It is ordered out of Canada or Mexico. One side effect that we need to be aware of is it can cause vision loss. We'd rather have Abi lose her sight then die at 7 months! But from what I have read, there have been no problems in children losing their eyesight while taking this medicine.
The second visit to Dr. Lloyd was just a follow up. He told us we could take Abi off of the Trileptal by the end of the week and keep her on the Topamax. That, we did!
Anyway, yesterday we received Abi's Vigabatrin. They come in little packets. They look like sugar packets. Now we have to find us a scale that will weigh in milligrams and weigh out her dosages. The only problem with finding a scale that measures in milligrams, is how much the scales cost. They range mostly up into the thousands. YUCK! So, we are still searching for a good scale, but at a lower cost. For now, we are going to see if the pharmacy will be willing to measure out her medicine for us.
And to update you on her other medication that Abi is on: TOPAMAX. She started her full dose of Topamax this week. Her seizures have decreased to 1 - 3 a day and they are much shorter than before, lasting anywhere from maybe one jerk to a seizure lasting up to 10 minutes. Not bad if you ask me! She's much more sleepier than she was before, and she sometimes acts like a zombie. She has regressed a little in her developmental skills. But we had the Up-to-3 workers out here yesterday, and have set some goals that we want to work on with Abi for the next 3 months. If the Vigabatrin starts to work, we can hopefully take her off of the Topamax. It would be nice to see my Abi's bright eyes and smile more often again and to hear her contagious giggle!
Sorry if this post was long and boring to some. But I like to keep an update on Abi for my sake.

Sitting & Tummy Time

Here is a video of Abi attempting to sit up on her own. She is really close and we are so excited for her to accomplish this milestone.

Some pictures of Abi. The first one is of "tummy time". Trying to build the muscle strength in her arms and tummy. The second picture is of Abi sitting up. We are so proud of her!

Acid Reflux, Constipation, Seizures & Up-to-3

These past few weeks Abi has really struggled with her Acid Reflux, and Dave & I have really struggled with figuring out what we can do for her. And on top of that, we all were lacking much needed sleep at the Richards home because of it. Abi has always had AR since she was born, & has been on medication to help it. As time went on, she started doing really well & so we weened her off of the medication. The weekend Abi was diagnosed with Aicardi Syndrome, she was up both Thursday & Friday nights screaming & crying non stop. She was not comfortable & not happy. So I talked to Dr. H. that saturday & told him of what was going on. He said it was her acid reflux & to put her back on her medication, and if it was not better by Tuesday, to give him a call & we would try something else. Well, it seemed to be working, but by the time the next weekend came, we again stayed up all night with her because she was doing the same thing. Dave & I ended up taking her into the ER last Saturday night because she was crying so bad. They looked her over, but could find nothing wrong. They too agreed that it sounded like her acid reflux. So they had us instead of giving her half a tablet of Prevacid a day, to give her the whole thing every day. It worked...but not for long. So, we took her into Dr. H. this past Wednesday, & he gave us some tips on what we can do to help her be more comfortable and help decrease her fussiness and our lack of sleep. We now are giving her half a tablet of Prevacid in the morning & the other half at night. If that seems to not help, we give her some drops that are for stomach cramps or colicky babies. AND, if that doesn't help, we give her Maalox. So far Abi has done pretty well these past 3 nights. We have had to give her the drops & Maalox, but yesterday I skipped giving her the drops & went straight for the Maalox. As soon as she took that, she was calm & slept great! Cross your fingers that this continues to help & we have her AR under control.
As for the constipation (if this makes you ill, then stop reading now), she has also struggled with bowel movements. We have tried Glycerin Suppositories, Miralax, prune juice, fruits & cereals with fibers in them. Since the ER incident, I am happy to say that Abi has had great bowel movements. Whew! Infact, we get really excited when she has a messy diaper, cause we know she is not having constipation issues & she is so happy afterwards, & it less pain for mom & dad trying to figure out what we can do to help. We just feed her prunes or any fruit with lots of fiber in it in the morning and afternoons. This way, she is keeping her bowels comfortable & clean. :0)

The seizure update is that Abi has gone from having 4-7 seizures a day, to anywhere from 1-5 seizures a day. She averages out at 3 a day. To us, it still seems a lot. She has been on a seizure medication called Trileptal for almost a month now {I cannot believe it has already been that long}. We wish we could get her on a medicine that would get rid of them all together. But right now it's "Trial & Error" with what medicines are going to help her. Every time Abi has a seizure, it puts her brain on hold or pause & it sets her back in her development. Although her seizures have decreased in number, they have come to be more intense & last anywhere from 10 minutes to an hour. She has different types of seizures, which have led her neurologist to believe that they might be Infantile Spasms (type of seizure that is found in Aicardi Syndrome). She is behind on a few things, but not very far behind. She does not roll from her back to her belly; she cannot sit up by herself (although, she is very close), she just started grabbing at her toys & this week, she has found her toes & has started grabbing for them. We have started evaluations with the "Up-To-3 Early Intervention Program" from Utah State University. Right now they come out and are evaluating her. The Physical Therapist came out a few weeks ago & evaluated Abi on her Motor Skills. Then this week they will be back over to evaluate her on her health, vision, & hearing, and also her general developmental skills. And then at the end of the month they will come back out & discuss her eligibility & plan goals & services for Abi. If she is eligible, then they will start working with her in the areas she needs to work on. We are so excited for this program!

We go back to Primary Children's to speak with the neurologist on Abigayle's diagnosis tomorrow. I am guessing he will tell us of things we need to know and expect about AS & also he will talk more to us about different seizure medications we can try with Abi. Also, he will most likely run another EEG on her to see if her seizures have turned into Infantile Spasms & to see if there is any other activity going on inside her brain. We are prepared for a long & informative day. We hope that we will find some things out that we don't already know, & are hoping for the best tomorrow!

Dave & I just want to thank everyone for all their love, concern, & support. We are truly blessed with such wonderful family & friends! We could not go through this without the support system that we have. Thank you all for everything! We cannot begin to even express how grateful we are for each and every one of you!
Thank you to our Dads, Jared & also, Dave, for having the faith & being so willing to give blessings to Abigayle, Dave & I. Our testimonies have grown tremendously & we are so grateful for the Gospel & for the power of prayer. We have felt the spirit on numerous occasions, & have been forever touched by the peace & comfort we have felt. Thank You! Thank YOU! THANK YOU!!!